Archive for 2021

December 2021 Newsletter

December 28th, 2021 by Ben Enyart

GLOBAL Community & Holiday Cheer – Your December Newsletter

Researcher Profile: Keith Smith

December 27th, 2021 by admin

Since childhood, Keith Smith has been curious about how “life” works, including why people are born different or get sick with diseases like cancer or Alzheimer’s.

Crnic Lab with Dr Espinosa

Today, as the Laboratory Sciences Program Manager at the Linda Crnic Institute for Down Syndrome, Keith gets to feed his curiosity by overseeing the day-to-day operations of Dr. Joaquín Espinosa’s clinical research on medical conditions that co-occur with Down syndrome. This includes the management of the game-changing, GLOBAL funded, Crnic Institute Human Trisome ProjectTM (HTP).

The HTP is one of the world’s largest studies aimed at understanding co-occurring diseases and conditions in people with Down syndrome and is made up of thousands of donated biological samples. Keith manages these samples and HTP Biobank collaborations with over 30 research teams across the University of Colorado school systems and around the world.

Keith’s career in Down syndrome research is motivated by a personal connection. His older brother, Randy, 39, happens to have Down syndrome and has had a profound impact on Keith’s life in more ways than one.

“The work that I do at the Crnic Institute is rooted in love and is near and dear to my heart,” says Keith. “Randy has inspired me to be humble, kind, patient and resilient…When I need motivation, I think about Randy to remind myself to not take anything for granted and take full advantage of all opportunities.”

The HTP is proving to be a powerful discovery accelerator as the Crnic Institute team looks at biological samples and asks questions like – do the 60+% of people with Down syndrome who have sleep apnea also all have some other condition? Or are they all seemingly protected from some other condition?

Picture of Keith, Kate, and Randy

Using data from the HTP, in 2016 the Crnic Institute published its groundbreaking study that showed Down syndrome can be categorized as an immune system disorder based on overproduction of the interferon immune system response.

Keith’s wife, Kate Waugh, PhD, is an immunologist and a researcher at the Crnic Institute who is also making important contributions to this body of work. It is having a deep impact on not only on the Crnic Institute research, but on dozens of labs across the world focusing on how to improve the lives of people with Down syndrome based on this important discovery. Kate’s dedication is deeply rooted in her relationship with Keith and Randy. She half jokes that she fell in love with Randy first and then warmed up to Keith.

“I have my best friend everyday ‘in the trenches,’” says Keith. “We’re able to somewhat disconnect when we are away from the lab, having two little girls at home – Lillian and Anna – but Randy and Down syndrome research is nearly always on our minds.”

Keith and Kate often express how they are “forever grateful” for the support and funding from the Global Down Syndrome Foundation. “We are so inspired by the generosity of Anna and John Sie, and by Michelle’s tireless dedication to her daughter and everyone with Down syndrome,” says Kate.

Keith agrees, “Their vision of a world-class academic home for Down syndrome research created the Crnic Institute and paved the way for better medical care for people with Down syndrome including Randy.”

“How I gravitated towards Down syndrome was something of magic,” continues Keith. “I believe things happen for a reason, and there is a reason I am here. To truly make a difference in the lives of people with Down syndrome, and we might just make a difference in cancer research, Alzheimer’s, and autoimmunity along the way!”

Keith recently received the 2020-2021 University Research Awards for Outstanding Senior PRA and was recognized for his work during the COVID-19 Pandemic. Congratulations to Keith Smith! GLOBAL is proud and grateful for his many contributions to research benefitting our loved ones with Down syndrome.

Whitten Family

Whitten Family

Denver, Dec 02, 2021 (GLOBE NEWSWIRE) — Global Down Syndrome Foundation (GLOBAL), welcomes David Tolleson as Senior Advisor Strategic Alliances. David will oversee GLOBAL’s Membership Programs, the award-winning Down Syndrome WorldTM magazine, and multiple existing and new strategic alliances.

“We are excited to have David join our executive team,” says Michelle Sie Whitten, GLOBAL President & CEO. “GLOBAL has so many joint projects with the NDSC that he can seamlessly help us manage, and his thoughtful and kind leadership in the Down syndrome community will help us deliver on our mission to improve the lives of the amazing people with Down syndrome who we serve.”

Tolleson comes to GLOBAL with nearly two decades of experience as the Executive Director at the National Down Syndrome Congress (NDSC) where he oversaw the growth and quality of the NDSC Annual Convention, the Rural Outreach Program, the Sibling Toolkit, the Prenatal Testing Pamphlet collaboration with GLOBAL, and is a founding contributor to the NIH Down Syndrome Consortium among other initiatives.

“I am excited and honored to join Michelle and the GLOBAL team, and to be able to continue to support our Down syndrome community in a meaningful way,” says Tolleson. “Having worked closely with the GLOBAL team over the years, I am confident that my experience will help to build strategies to deliver GLOBAL’s important goals, strengthen our community engagement, and support self-advocates to live longer and healthier lives.”

 


 

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down SyndromePrenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome World TM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

 

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

November 2021 Newsletter

November 30th, 2021 by Ben Enyart

National Cooperation – Your November Newsletter

National Down Syndrome Society joins Global Down Syndrome Foundation and the National Down Syndrome Congress to Support an Important National Resource

DENVER, ATLANTA & NEW YORK – November 24, 2021 – Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), and National Down Syndrome Society (NDSS) are pleased to announce they have entered into a strategic collaboration to co-publish the Prenatal Testing & Information About Down Syndrome pamphlet (PTP), an important and free resource. This is the first resource for expectant parents that is supported by all three national Down syndrome advocacy organizations.

The PTP was created in 2012 by GLOBAL and NDSC and was informed by the first national survey of pregnant women, OBGYNs, OBGYN nurses and genetic counselors. It was also reviewed by Down syndrome and other medical professionals. The content includes information about which prenatal tests are definitive and which are not, what parents and families can expect, early milestones, and resources. The PTP is available in English, Spanish and Icelandic.

“We are so pleased that NDSS President & CEO Kandi Pickard and her team have agreed to join us in supporting the PTP,” says Michelle Sie Whitten, GLOBAL President & CEO. “Together we can do so much more – translation into many more languages, more conference representation, and distribution to medical offices, Down syndrome organizations, and families.”

Shauntel Neal-Howe, President of the Board of NDSC agreed, “This is a wonderful collaboration of national organizations and great step forward for the Down syndrome community. We look forward to working with both GLOBAL and NDSS on this very important initiative.”

“NDSS is working collaboratively with our colleagues to support the entire Down syndrome community,” says Kandi Pickard, President & CEO of NDSS. “We are excited to work with our friends at GLOBAL and NDSC. Hopefully this is just a start!”

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

To learn more about National Down Syndrome Congress, visit www.ndsccenter.org

To learn more about National Down Syndrome Society, visit www.ndss.org


Press Contacts      

Anca Call
Global Down Syndrome Foundation
c: (720) 320-3832

Rhonda Rice
National Down Syndrome Congress
c: (770) 604-9500

Michelle Sagan
National Down Syndrome Society
c: (301) 728-0447